Unexplained rash

Posted by hannahzenisek @hannahzenisek, Nov 24, 2023

Hello everyone, I’m coming on here in hopes that someone might be able to help me. For about a month now I have been dealing with an unexplained rash. I have been to multiple different doctors who have given me no answers and I’m wondering if anyone on here has any thoughts. I had a rash that started on both of my ears and since then has now spread to my face, neck, chest and inner thighs. It is extremely itchy and feels itchy 24/7. It’s mostly little flat red dots, but I have been getting hives on my face more specifically on my cheeks and around my eyes. They have given me topical and oral steroids to take to try and get rid of the rash but I don’t feel that either of those are working well. I also noticed today that I have bruising on both my inner thighs, I’m not sure if that’s from scratching or what, but I hadn’t noticed those before. Has anyone experienced anything like this? Or does anything have any thoughts on what this could be??? Any help would be extremely appreciated!

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Welcome to Connect, @hannahzenisek. Ooh, this unexplained rash and itch has to be so frustrating for you. You have my empathy because a few years ago I had reactions to medication I had to take and the itching drove me crazy! I swear it’s worse than pain!
You’ve mentioned seeing doctors about this new condition and being treated with topical and oral steroids. I’m sure they asked about any new foods, change in laundry detergents, cosmetics, etc.. Were any blood samples taken to check for histamine tolerance levels, autoimmune diseases or a full CBC? How about biopsies of the areas with the rash?

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I totally agree about the itching!! I did some blood work because I thought it was maybe hormonal or deficiency but everything came back normal. I have not changed anything at all. No autoimmune disease testing though. They want me to finish my meds before doing anything else but it’s just continuing to get worse. No biopsies because they feel like it’s just a dermatitis or something so they thought it would be a waste.

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Have you been an allergist? Research the 5 Day Extended Patch Test on the internet. This test saved me. Your entire upper back will be covered with patches testing for various natural and chemical elements for 5 full days which if allergic will react. Not all dermatologists or allergists are licensed for this test. Thus I suffered many years because my dermatologists never told me about this test. I was told it was everything from heat rash, yeast issues, fungus, one told me it was eczema and to stop washing with soap. The derm that told me it was eczema didn't even tell me there were types of eczema with different causes and different ways to treat. Never told me how to learn via a test what to avoid. All my derms offered were topical steroids; steroids are not a cure, they don't stop the cause, they are only a treatment that come with negative side effects over time.
I didn't develop this problem until middle age 50, which is common for the forms of eczema I have. Our bodies can tolerate certain elements and chemicals, both natural and artificial, for decades but finally the body says enough is enough. Reaction time lessons and symptoms become more severe. There is no cure only avoidance. I am free of my Allergic Contact Dermatitis, ACD, symptoms today, free of all 3 types of eczema symptoms today because of blogging sites like the Mayo and Inspire, and Earthclinic where I educated myself, plus of course working with doctors and telling them what I learned I needed done. I've read that Facebook has good sites for skin issues also. Mind you I had excellent medical in a major city full of specialists. Still don't assume they all have the answers. Dermatologists treat hundreds of skin diseases, you must do your own research based on your symptoms. New Zealand has a very good skin site which has thousands of photos which helped me diagnosis one of my less common types of eczema, Perioral. Mayo led me to a home treatment that works for about 40% of us, so simple, for my Grover's Disease, GD, a form of eczema. GD is a truly debilitating form without any proven prescriptive medical treatment and I have been free of it for 4 years now because of the Mayo site and my angel, a contributor who shared. My 4th dermatologists is where I learned about the 5 Day Patch Test. Keep searching and best of luck, fill us in on what you learn. All can learn from you.

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@hannahzenisek

I totally agree about the itching!! I did some blood work because I thought it was maybe hormonal or deficiency but everything came back normal. I have not changed anything at all. No autoimmune disease testing though. They want me to finish my meds before doing anything else but it’s just continuing to get worse. No biopsies because they feel like it’s just a dermatitis or something so they thought it would be a waste.

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You’re being a woman of mystery with this skin issue. It’s interesting that your symptoms continue to worsen even though you’re on prednisone. Usually that calms things down. It’s encouraging from what you’re saying that your doctors continue to be working on this with you.

Curious to know if you’d tried antihistamines?

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@gardeningjunkie

Have you been an allergist? Research the 5 Day Extended Patch Test on the internet. This test saved me. Your entire upper back will be covered with patches testing for various natural and chemical elements for 5 full days which if allergic will react. Not all dermatologists or allergists are licensed for this test. Thus I suffered many years because my dermatologists never told me about this test. I was told it was everything from heat rash, yeast issues, fungus, one told me it was eczema and to stop washing with soap. The derm that told me it was eczema didn't even tell me there were types of eczema with different causes and different ways to treat. Never told me how to learn via a test what to avoid. All my derms offered were topical steroids; steroids are not a cure, they don't stop the cause, they are only a treatment that come with negative side effects over time.
I didn't develop this problem until middle age 50, which is common for the forms of eczema I have. Our bodies can tolerate certain elements and chemicals, both natural and artificial, for decades but finally the body says enough is enough. Reaction time lessons and symptoms become more severe. There is no cure only avoidance. I am free of my Allergic Contact Dermatitis, ACD, symptoms today, free of all 3 types of eczema symptoms today because of blogging sites like the Mayo and Inspire, and Earthclinic where I educated myself, plus of course working with doctors and telling them what I learned I needed done. I've read that Facebook has good sites for skin issues also. Mind you I had excellent medical in a major city full of specialists. Still don't assume they all have the answers. Dermatologists treat hundreds of skin diseases, you must do your own research based on your symptoms. New Zealand has a very good skin site which has thousands of photos which helped me diagnosis one of my less common types of eczema, Perioral. Mayo led me to a home treatment that works for about 40% of us, so simple, for my Grover's Disease, GD, a form of eczema. GD is a truly debilitating form without any proven prescriptive medical treatment and I have been free of it for 4 years now because of the Mayo site and my angel, a contributor who shared. My 4th dermatologists is where I learned about the 5 Day Patch Test. Keep searching and best of luck, fill us in on what you learn. All can learn from you.

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What home treatment worked for you?

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@hbb

What home treatment worked for you?

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Has anyone suggested lichen planus? I have had that for years. It usually looks round and red. Sometimes has some other shape, but not usually. For many years clobetasol was prescribed but then the insurance refused that and allowed betamethasone. It's the ointment. Just a small amount on any rash.

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@hbb

What home treatment worked for you?

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Treatment depends on the type of eczema you have. I have or had 3 or 4 types.

1-Perioral Eczema- turns out I am allergic to 1 class out of the 5 classes of steroids with carry over to 2 other classes. I only learned this on the 5 Day Extended Patch Test. I gave up a nasal steroid and no more Perioral rash around my mouth and eyes. So avoidance deleted the cause of the rash. It has not returned in 4 or 5 years.
Hannahzenisek may well have this form.
2-Grover's Disease, aka, Transient Acantholytic Dermatitis- At home heavy metal detox using cilantro has put this miserable form into remission since March 2019.
3-Allergic Contact Dermatitis, ACD- Extreme avoidance of over a dozen allergens in over hundreds of daily contacts which have been replaced with contacts friendly to me. It would have been impossible to guess what to avoid without the 5 Day Extended Patch Test. Must avoid these allergens for life. Not one expensive topical helped.
4- Mystery Form- never given a name and the most extremely debilitating form. My internal skin was alive with stinging, burning and taser like zapping shocks preventing me from sleep. It could be anywhere in my body. I based it on high histamine levels. No external rashes. For this form I was given a potent corticosteroid shot annually, Kenalog-40 which would control these sensation's for about 10 months, only for them to start up again and I would hold on until the end of the year because of dangerous side effects of this injection. After this went on for about 3 years and coinciding with my Grover's Disease, I did a processed sugar detox about 6 months before starting the cilantro treatment. I didn't need my upcoming Kenalog injection. This is all based on the William Crooke, Md's book, The Yeast Connection Handbook. This book saved my life. Now 5 years later on the maintenances plan I am still free of this mystery form of eczema. Mind you, I never tested positive for yeast issues.
Lesson is, keep fighting eczema warriors and get an exact diagnosis of the form of eczema you have. Yet I can't give advice on the most common form, Atopic. I've been free of all forms for 4 years now and always vigilant. Eczema is for life.

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Can you send us a photo of your rash? I was able to self diagnosis one of my forms of eczema based on photo comparisons. Previously my dems had misdiagnosed it and the topical ointment prescribed made it worse.

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